Get the Facts: Providing and Managing Care

A curated, annotated, and extensive list of links to vital caregiving information

American Autism Association provides families impacted by autism with informational resources, educational workshops, therapeutic recreational programs, advocacy, virtual workshops, and the Autism Help Hotline. Their resources are provided at low cost or for free to families; spreading autism awareness and acceptance is one of their primary goals.

Autism Research Institute supports the health and well-being of people affected by autism through innovative, impactful research, education, outreach and cooperative efforts with other organizations worldwide. They offer a variety of tools for Screening and Assessment of autism that can easily be accessed on their website.

Autism Speaks is dedicated to creating an inclusive world for all individuals with autism throughout their lifespan. Through their advocacy, services, supports, research and by promoting innovation and advances in care, they serve the needs of autistic individuals and their families.

  • First 100 Days Kit assists families in getting the critical information they need in the first 100 days after an autism diagnosis.
  • Autism Response Team (ART) is an information line for the autism community. Team members are specially trained to provide personalized information and resources.
  • Resource Guide is an exhaustive, thoroughly researched compendium of resources. Sorted by state, life stage, and level of support, this guide quickly identifies local resources and experts in every state and in specific communities across the US.

Care.com provides a digital platform that enables families to find, manage, and pay for child care, senior care, special needs care, pet care, housekeepers, and tutors.

Caregiver Support Services: A nurse-led company that has been training and supporting both front-line and family caregivers since 1997. Their online Caregiver Training program teaches the practical skills every caregiver needs in order to provide quality care. Their evidence-based, holistic Caregiver Wellness model shows caregivers how to provide the best possible care for themselves while also caring for others.

Caring Village: An easy-to-use dashboard and mobile app that enables caregivers to coordinate the care of loved ones and selectively disseminate information with a trusted circle of participants. This free, secure solution links caregivers to reliable products, services, and information.

Christopher & Dana Reeve Foundation: is dedicated to improving quality of life for individuals and families impacted by paralysis. They offer guidance on health, rehabilitation, accessible travel, wheelchairs and financial/insurance concerns. An online resource map allows you to search by zip code or location and find local resources and supportive organizations.

Disability Services is a federal government website with links to programs and services offered by numerous government agencies. It is designed as a one-stop website where people with disabilities, and their caregivers, can easily find the help they need. Subsections include:

  • Benefits and Insurance
  • Caregiver Support
  • Financial Assistance and Support Services
  • Government and local Disability Programs
  • Jobs and Education
  • Veterans Disability Benefits
  • Your Legal Disability Rights.

Easter Seals offers a variety of programs and resources to provide support and care for caregivers. Their online Step-by-Step Caregiving Guide offers help with caregiving decisions. They provide onsite services at 400 locations across the US for children and adults, including adult day care, in-home care, and camps for special-needs children. Services vary by site. Contact them with questions about services offered in your community.

Family Caregiver Alliance is a national non-profit that has supported and championed the cause of family caregivers for over 40 years. Their highly regarded care management offerings include:

  • Services by State helps family caregivers in other places to locate public, nonprofit, and private programs and services nearest their loved one.
  • CareNav is a secure online source for quality information, support, and resources for family caregivers of adults with chronic physical or cognitive conditions such as Alzheimer’s, stroke, Parkinson’s, and other illnesses. Access this tool on the FCA landing page.
  • Resource Center is a collection of all FCA’s print, audio, and video resources. Type in your topic for easy-to-use, quality information on health conditions, and ways to manage care.
  • Assistive Technology guide to assistive devices that help care receivers live safely and independently and help make caregiving easier and more enjoyable.
  • Bay Area Caregiver Resource Center provides free and low-cost services to caregivers in the greater San Francisco Bay area

Family Voices is a national grassroots network for families with special-needs children and youth. They are a trusted resource on health care and provide programs, projects, resources, and support to these families.

Guardian Nurses is a nurse-owned patient advocacy company whose caring, competent RN’s work as personal guides through the complex health care system. They gather information; answer questions in plain language; stand-up for the needs of clients and help clients make sound decisions. By communicating, intervening, and advocating on their clients’ behalf with care providers, insurers, and support resources, Guardian Nurses makes it easier for clients to find their way safely and efficiently through challenging healthcare situations. For advice and advocacy when struggling with a healthcare issue, email them at [email protected] or call 215‑836‑0260, option 3.

Ianacare: Equips family caregivers with practical tools and connects them to supportive communities, so no one goes through the caregiving journey alone. The company’s reassuring name tells caregivers. “I am not alone.” Download the free app on their website, the Apple or Google App Store.

Lotsa Helping Hands provides a free secure group calendar to coordinate offers for help with caregiving tasks. “Lotsa” also offers a way to keep a “care team” informed with status updates, photo galleries, and message boards. A Lotsa App can be downloaded from the App Store or Google Play Store.

MedicAlert Foundation is a non-profit organization dedicated to saving lives by offering internationally recognized Medical IDs; an online Emergency Health Record that members can maintain and access from anywhere, at any time; and a 24/7 Emergency Response Team with access to members’ health records and trained to provide critical information to first responders.

Medicare provides several databases that allow consumers to compare providers in eight categories of post-acute care:

  • Doctors and clinicians
  • Hospitals
  • Nursing homes including rehab services
  • Home health services
  • Hospice care
  • Inpatient rehabilitation facilities
  • Long-term care hospitals
  • Dialysis facilities

National Alliance for Caregiving is dedicated to improving quality of life for caregivers and those receiving their care through an emphasis on research and advocacy. In partnership with patient-advocacy organizations, they offer several excellent care management resources:

National Association for Down Syndrome, the oldest organization in the US serving individuals with Down syndrome and their families, is dedicated to helping all with Down syndrome to achieve their full potential. Some of their many offerings are:

National Down Syndrome Congress provides information, advocacy and support concerning all aspects of life for individuals with Down syndrome. Their multiple resources include:

National Down Syndrome Society focuses on policy change, providing resources, engaging with local communities and shifting public perceptions. They offer an extensive collection of Printable Employment Resources that includes an employment guide for employers and employees with Down syndrome and other disabilities; resume resources; an entrepreneurship guide, and much more.

National Transitions of Care Coalition are industry leaders who have created resources to help consumers and professionals better understand and manage issues associated with transitioning from one health care setting to another. For patients and caregivers, they offer free tools on topics like medication management, guidelines for a hospital stay, and protecting caregiver health.

Next Step in Care is a program of United Hospital Fund that provides free, high-quality information, practical guides, and checklists to help family caregivers and health care providers plan safe, smooth transitions from one health care setting to another: from home to hospital, hospital to home, to home with home care, or to in-patient rehab. Find downloadable “how-to” guides in multiple languages at Topics include:

  • Guides for All Caregivers
  • Hospital Stay and Discharge Planning Options
  • Rehabilitation
  • Home Care

Patient Advocate Foundation is a non-profit charity that offers a broad set of advocacy services. They help patients with chronic, life-threatening, and debilitating diseases to access quality care and decrease the financial burden of medical treatment. Learn about their free services online:

Share the Care is an award-winning, “group-based caregiving model” that has been proven to help prevent caregiver burnout. Share the Care provides specific guidance, and all the tools caregivers need for organizing and maintaining a team of caregivers who will share the responsibilities of caregiving. Practical, user-friendly resources are found in their handbook as well as online and in training courses.

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